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Sunday, January 22, 2012

Rylie Updates

Miss Rylie Noelle turned one on January 10th. She wasn't sure what to do with the birthday cake.

Where's the real food? Are you hiding it under here?

"I'm annoyed with you people right now."

End of the party scene: Rylie has lost her pants to some sort of incident and is trying to eat a transformer, Hayden is laughing (or yelling?) at her, and Grandpa is trying really hard how to figure out Super Smash Brothers on the Wii because Hayden told him to.

Rylie is now on all solid food, no bottles, and no milk. She made the transition to sippy cups easily because she wants what her brother has. She is having constipation problems, possibly because of a corn allergy? I want to do a blood test and see what's she's allergic to (as soon as I can afford the $220 test.)

She is a very good eater, and seems to be gaining body fat, but her weight at her one year appointment went down in percentile again, from 9th percentile to 5th. The dietitian gave me some rice protein powder, suggested more probiotics to address her eczema and distended belly, and foods like potatos, potato chips, and banana protein shakes to increase her calories. She seems to like all of these, although the seeds from the bananas get caught in the holes of the sippy cup, so I'll have to see if she will drink out of a straw for that one.

Notice the trail of destruction leading up to the photo. This is Rylie's superpower.

Rylie was born with her left foot turned in. As the doctor said it would, it has gotten better, especially as she has begun trying to walk, but I noticed that she was starting to walk on her foot sideways; as she walked on it she smashed it down and was walking on the side and top of her foot. I took her to Ortho Indy a few weeks ago and the Peds doctor there took an xray, looked at her feet, and tested her reflexes. He said I needed to do some stretches with her, to stretch out her tendon, and that she needed to wear a brace at night. I took her to AOI and they made a cast of her foot. I then had to go back a week later to pick up the brace. The doctor said when he put it on her foot, "they are like little Houdini's, so expect it to come off a lot." Yep. Especially smarty pants Miss Rylie, who knows how to pull off the Velcro straps. She was taking several steps before I started having her wear the brace at night, then she quit walking. My guess is that it is changing the way she walks, which was confusing her. But just today she took maybe 5 steps on 5 different occasions, so she's getting used to it. And it certainly doesn't slow her down in her adventures. It does concern me a little at night, because she usually sleeps on her stomach with her feet tucked under her. With the brace she seems really uncomfortable, and I worry that she's going to cut off her circulation some how. I've been trying to put it on as loosely as I can (keeping in mind the Houdini factor), and I've been putting one of Hayden's socks on her to help it fit better (since it is longer and will fit the length of the brace.) The doctor said to check for redness in the mornings, and it seems ok. I'm supposed to take her back to AOI this week to check the fit, so I can ask what he thinks. I'm supposed to take her back to Ortho Indy the following week. If she isn't making enough progress she'll have to wear the brace all day, not just at night.

A side note to this is the funny (to me) conversation on the phone with AOI the day after her first appointment. Keep in mind that it's still December at this point, and I was purposely scheduling as many doctors appointments as I could for the end of the year. Woman from AOI: "I'm calling to let you know that your insurance has denied your claim for Rylie's brace." Me: "Um... why is that?" "They said you haven't met your deductable." I laughed out loud. "You filed it for 2011, right? "Yes." "Well between a $20,000 C-section in January and full time, $80/hr Autism school every week this year, we met our deductible back in June. So you can call them back and tell them they'd better figure it out. They're either lying or really confused." When I took Rylie to the next appointment to get the brace fitted she told me her supervisor had contacted the insurance again and that we owed nothing. Yeah, that's what I thought.

This is what Rylie thinks of our Healthcare system.

I went to wake up Hayden one morning and all I can see are two little feet sticking out. Mind you he started out the night with his head on the bed by those books, and his feet pointing toward the left side of the bed.

Hayden wanted to make a clubhouse today because they made one on Yo Gabba Gabba.

More updates to come on Hayden's nutrition plan. Two steps forward, one step back, but he is improving.

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Hope and Lavender is dedicated to helping Hayden recover from Autism, preventing Autism in my daughter Rylie, and sharing the journey with friends and family.

I chose Hope and Lavender as my blog title, so that each time I read it I get a small dose of peace. The word Lavender makes me think first of a warm summer day in my garden, and second of a nice calm, quiet, bath. Hope is the concept that gets me through the rough days.